PT Update #3.

Last week I finally had my appointment with the ENT. I was nervous but very hopeful and optimistic.

Turns out, hope can be dangerous.

Within seconds of him opening his mouth I knew he wasn't the right doctor. I believe his first words were "There's nothing that can be done." Other excerpts of the "conversation" (I put conversation in quotes because it was basically just him lecturing us) were "Anything you read online is pretty much grasping at straws" and "It isn't very common in people your age but it isn't unheard of. It's just a sign of early onset hearing loss", and "It's really very, very, common. Asking someone if they have tinnitus is like asking if they have a right thumb, it happens to everyone", as well as "It's just something you can't really do anything about so you'll have to learn how to cope with it." and "Sometimes once you actually reach the point of severe hearing loss, hearing aids sometimes help". Also "You probably damaged your ear from hearing a loud noise or listening to loud music."

Um, okay, first I think I would remember if something suddenly "happened" that set off this noise. AND if it was loud music the majority of my generation (and my parent's generations for that matter) would have what I do. It seems to me that HE'S grasping at straws.

Zero bedside manner. Zero awareness that even if he was correct, he was basically saying "You can deal with the endless, distracting, overwhelming, maddening pulsing noise in your ear for the rest of your life or until you go deaf."

When Justin asked about Intercranial Hypertension, something that multiple studies have pointed to for being linked with PT, the doctor pretty much smirked in his face. Not only is Intercranial Hypertension linked to PT, but it is specifically linked to young (check) women (check) who are overweight (check) and on birth control (check). The fact that the doctor dismissed it right away and said it was grasping at straws made it very apparent that he doesn't know the modern research and is not willing to even admit that it could be a possibility. He was just so arrogant and condescending I wanted to punch him.

The other obnoxious thing about this appointment is that he basically exclusively spoke with Justin. As if I wasn't sitting there. I started crying out of anger and frustration. Both of us are taking time off of work and waited weeks for this appointment just for him to tell me what a google search for tinnitus will tell me. Pulsatile Tinnitus IS NOT your run of the mill tinnitus. Yes, everyone experiences tinnitus at times. Yes, tinnitus is very common. But is PULSATILE tinnitus common? How is it that it changes when I bend down or move my neck/head? Why does it lessen if I push on my carotid artery? Why do I sometimes hear that high pitched tinnitus noise AND the pulse at the same time? How is it that I can record the noise with my phone? Why does it seem to change in intensity and pitch? Why does it seem worse when I'm on my period? Does it not seem important that it basically started once I got on birth control and gained weight? It HAS to be vascular.

It made for a really awful couple of  days. Even knowing that not all options have been explored, it is really difficult to hear that kind of reply from a professional. This was supposed to be the next step to figuring out what to do. I feel like it stripped away my resilience. It seemed like when I would hear my whoosh it felt especially loud simply knowing that there would be no relief.

I wish that after his first sentence we just stood up and walked out. Instead we paid a larger co-pay than usual because he's a specialist. I don't think I've ever really had a real, full-on panic attack in my life until seconds from walking out of the building. To think that I would just hear this day in and day out for the rest of my life or until I could no longer hear anything at all was enough to put me over the edge. The callousness and obliviousness he displayed was staggering. His summary write-up told that he advised me on coping methods and that I complained of a ringing noise and had hearing loss. The coping method he told me was to listen to a fan or white noise machine at night. I didn't even bother responding that I already do and have for a long time even before the PT, because I figure it was pointless to talk to him.

Okay, but I had an audiogram and the person who conducted that and the ENT nurse said it was perfectly normal. And it is NOT A RINGING NOISE. Does ANYONE listen at this stupid office?!?

I have slowly started feeling better after 2 weeks and am back to trying to figure it out on my own. I am trying to lose weight and I'm going to go off of birth control to try and see if that helps. Hormones are mighty powerful and I would not be surprised if that is a factor.

All in all, it was a waste of time, money, energy, and felt like a huge step back. I am NEVER going to go to a doctor again before contacting them before hand to make sure that they know the damn difference between tinnitus and PT and aren't going to be a condescending ass to me and my husband.

My Pulsatile Tinnitus Story

Be prepared to read a crap-ton. That's what this blog is for, anyway. Writing out what I'm thinking and feeling. Before you read this post, I want to clarify that I know that in the big scheme of things I should be grateful for my health and my life. I am. I understand fully that my situation could be a lot worse.

I have pulsatile tinnitus. This means that I can hear a noise in my ears that is to the beat of my heart. For a long time I didn't know what it was that I had. I still don't really know what causes it, but I am glad I know that it has a name and other people experience it too. Many people experience tinnitus, but only 3% of those that do, have pulsatile tinnitus.

The majority of my experience with pulsatile tinnitus has always been in just my left ear. It all started about 3 to 4 years ago. It's hard to pinpoint a time, because it has been a long time and only around 2013 did it worsen. It used to be only occasionally, usually at night. It wouldn't last very long and then it would go away. This is fairly normal for a lot of people, I think. However, for me, it gradually became more and more present. I tried a lot of different things for various amounts of time, including drinking a lot more water, reducing salt, less starch, more protein, stretching exercises, I started going to the gym at that point, tried to improve my posture while at the desk, etc., anything I could think of that could be causing it. I have yet to see any difference with the noise depending on diet. It doesn't hurt to do those things, though.

Instead of hearing it just for a moment, it would start going for a good 10 to 15 minutes. That turned into a half hour to a full hour, to happening from about 6pm until I went to bed, to being in the middle of the day, instead of just at night. 

Fast forward, and it is the noise I hear almost 24 hours of the day. About two months ago I started to hear it in my right ear at the same time. Luckily, this hasn't set in completely, otherwise I think I'd go berserk and you'd be getting blog updates from an insane asylum. 

From the moment I wake up to the moment I fall asleep, it is what I hear. It doesn't affect my hearing, but it does affect my focus. It feels like it takes peace out of a lot of situations. This past weekend I felt really happy because the window was open and birds were singing, and the sun was shining through the blinds while I was snuggled under the fluffy comforter. But I can't fully concentrate on the bird noises or fully relax, because there is this constant drumming pulse in my ears.

Sometimes it is sort of a dim background noise. It also isn't very consistent. It will be quiet, then loud, then quiet again within seconds. It can be roaring and I turn my head and it goes back to just whooshing. I'll bend over and it is a constant "whoosh" instead of a beat. The tone can change too. At times it is a mid-range droning whoosh, other times it can be sort of higher pitched and loud. I can't seem to correlate these differences. In addition to that, I can feel the muscles around my right ear tense up when it goes, in a way that my left ear doesn't. There is just a lot that doesn't add up.

It can be disorienting. It feels like when I'm on the phone and someone else in the room starts talking to me. Like two people are talking to me at the same time, but neither can hear each other.

When I'm having a conversation with my husband and he is telling me something important, I sometimes find myself struggling to focus on his words, because it might be an especially bad moment, and they are roaring in my ears.

I'll try to stop whining at his point in order to deliver some of the news that we have found:

I went to a nurse practitioner, who said it might be fluid in my middle ear. She told me to take Claritin D for 10 days. If that doesn't work, try Mucinex. I did this for about a full month, every day. It lessened the whooshing noise, but it never fully went away. I scheduled another appointment with her, which was about 5 minutes long because she just scheduled an appointment with an ENT. I was a little annoyed that I waited a month and a half, took off work, and paid a co-pay just to have a 5 minute "conversation" that consisted of her just writing a name on a business card and sending me to the secretary for the to make an appointment. Okay. I can make an appointment myself. Don't tell me to come back and see you if the problem persists if you are just going to do that.

At the ENT they took a hearing test and tested the pressure in my ears. Everything was normal. I don't have fluid in my middle ear. On one hand, I was relieved I didn't have to get tubes in my ears. On the other, I was discouraged that I still didn't know what it was or how I could stop it.  I was a bit frustrated because within this visit I spoke to 3 different people. All of them referred to the noise as buzzing or humming. I tried to express that it wasn't a constant hum, it was a pulsing beating noise, and no, I don't have ear damage, no, I haven't had a sports injury, no, I don't have sinus problems. Luckily, we did get some progress, in eliminating the possibility of fluid in my middle ear.

The ENT specialist told me to get blood drawn because I might be anemic, which could cause that noise. She also scheduled a CT Angiogram at the hospital for the following week, because it could be a kinked or bent blood vessel in my head or neck that is causing that noise in my left ear (at this point I had never heard it in my right ear).

I had the angiogram and everything was normal. It was the worst good news I had heard. It meant that luckily, I didn't have a tumor or a partially blocked vein in my neck or head, but it also meant that we still didn't know anything. This was a maddening experience because it felt like pulling teeth to get anyone to respond or send me my test results. There has been no follow up from the ENT specialist, despite her seeming to know that if the test results came back normal, that meant that nothing has been solved. It took about 17 phone calls, who knows how many transfers, and many, many answering machines to finally get a human being to talk to. When I did, they told me that they couldn't find my blood work and that it had been lost. Then they told me that I can come in and get a new blood sample, and they won't charge me. Gee, thanks, I appreciate that...?

Oh well, this gives me a change to clarify that I want every possible test result done when they analyze my blood, not just the basics.

In the meantime, my sweet husband has done a lot of research and we are trying out different things. We have found an entire community of people experiencing the never-ending noise. My coworker let me borrow a blood pressure cuff kit she has, and we have found that I tend to have low blood pressure. This is strange, because I was expecting high blood pressure. I also tend to hear it less after drinking tea or coffee. So caffeine/the effects of caffeine, which is vascular, play a role, as well.  So far our top suspects seem to all be related to blood. Justin noticed that a lot of the people on the Whooshers website and community page were women. In digging further, we found that quite a lot of women who have pulsatile tinnitus also are on birth control, specifically the one I am on. We also think my thyroid could be playing a role. Just more reason to have blood test results done.

Another bit of progress I have found, is that on one of the whooshers websites I found that some people can record their whoosh. I found to my amazement that by simply putting my phone mic to my ear and hitting record, I can hear my whoosh! Other people can hear it too! This alone lifted my spirits. It felt like having bad cramps while on your period, and magically being able to make every male in the room experience the hell of cramps, if only for a minute. It felt like being able to say "you don't understand unless you experience it, and for 15 seconds, you can!". Not that I want to spread misery, but it's a relief to be able to explain exactly how it sounds constantly.

We're hoping to find another doctor that will really act as an advocate for me. I know that I am not a high priority. My life isn't in danger and I'm not in physical pain. But when I want to cry because it just won't leave me alone, it's a problem. When I want to punch our neighbors in the face for playing their bass which works in a weird opposite and disorienting beat to my ears, it's a problem. When I want to enjoy the sound of nature, not the sound of my heart whooshing in my ear, it's a problem. When I want to go ballistic and smash things in the doctor's office because they tell me that it's tinnitus, and a lot of people experience it, (in other words, get over it) and that they'll just book an appointment for 8 weeks out, it's a problem. When I feel completely overwhelmed to tears while at work, at the prospect of just having to "deal with it" for the rest of my life, it's a problem.

Dumb Day

Cold and sad and cranky and tired and stressed and hungry. Feeling really melancholy today. I just want all social and scholarly obligations to go away. I also want a hot bath, fuzzy socks, stretchy pants, a bowl of hot tomato soup and a grilled cheese sandwich, lots of blankies, the seventh Harry Potter, and everyone to be happy and content and super happy with everything I say and do and feel. I want everyone to stop draining my emotional energy and so I can stop feeling like I can't get things right.

Who I need is Kitty. :'(  Cats always are the best for melancholy days.

Anxiety

I have been feeling a lot of up and down lately. From calm, content, and happy, feeling like everything is going to work out and be great and wonderful to anxious, frustrated, and furious and like everything is stupid and pointless.

Blah.

Harshness of Reality

Okay, so that is sort of a melodramatic title for this post, I'll admit. In this case, the harshness of reality is that my closet is too small for my materialistic desires. I'll admit the other harsh realities are less melodramatic, although I can't promise they aren't less materialistic.

I really just wish that my life would get moving. I feel like I am at a stand still, waiting for life to happen. But that is how I have felt for a long time. And maybe it is just because I still don't identify myself as an adult, but once I realize that there are plenty of MUCH MORE responsible and adult-like 20 year olds, it makes me think that I need to stop dragging my feet about life. And this isn't really about feeling like an adult. It is more about feeling like I am stuck in one place, and one time I am going to wake up and realize it is my fault. Which it is/would be. And I am trying to change this. But at the same time I also feel like there are certain things that are not within my control. (more or less, a boyfriend, a social circle. okay, so these things are SORT of in my control. but it isn't like I can snap my fingers and all of a sudden the cute guy in my class notices me, or like I can snap my fingers and have friends that aren't just friends because we have a class project together. it is easy for some people, but not me.)

It is not that I don't know these things aren't obtainable (whoa, triple negative), but that I just wish they would stop taking their sweet time. And I know that it takes a lot of effort and focus on my part in order to get my life to the point that I want it to, but it also feels like that would take a lot of risk and money and it won't even end up being exactly what I imagined in the first place. Okay so I lied about the other realities not being melodramatic. Uh, sorry.

Anyway, I also just want all my dreams to come true, and I know that only very, very, very lucky people get that. Or maybe just people who aren't idealist-bordering on perfectionists, and are okay with how things are. But I want my farm house. And I want my cheap cinema. And my cafe. And I want to be in shape and have really awesome clothes and the confidence to pull them off and to not be mistaken for a 16 year old. And I want money and a huge book and music collection, and to actually be motivated to do art regularly and to have direction in life. Mostly I just really want a bigger closet.

BBC Angst

I have had the Reading and Leeds festival marked on my calender since April. This is the festival that The Libertines are reforming at. And what happens when the date FINALLY comes around? The stupid BBC site won't work. Because I don't live in the UK. Oh, sure, it works for about a dozen OTHER bands, for about three songs, but it won't play the full set of any one band, unless you are watching BBC Three. And BBC won't work. I want to cry. The Libertines are quite possibly one of my very favorite bands. I have both of their cds, imported from the UK, I have about 100 songs that are JUST demos, live performances, bootlegs, and unreleased tracks. Not only that but I have both Babyshambles records bought, along with Pete Doherty's solo album. I also have Carl Barat's compilation mixed cd, and plan to get his solo album. I also bought two shirts. I LOVE this band. I know the secrets and gossip and history of them. AND ALL I WAS ASKING was to see their reformation gig. I don't think this is too much to ask for, ESPECIALLY because it is being broadcast onto television there. It isn't like a little festival that doesn't have enormous cameras and cranes and publicity. Blah. I'm going to go eat a lot of Nutella and probably ignore my homework even more.

Pathetic

My friend Brandon got back from his mission to Brazil yesterday. I am happy he is home, but I have to admit, it makes me feel more aware of how little has changed with me since he left. In one way, I have changed a lot, and probably not for the better due to eh, I would say emotional hardships. But at the same time, when he asks "so, what's going on in your life?" all I can say is "um, well. I'm still going to school, but I don't know what for. and I don't have a job, but that will hopefully change soon." which BASICALLY is exactly the same thing that was going on two years ago. I still don't have any direction in life. I will admit that when I am around Brandon, who is super smart on top of being really talented at multiple things, that I feel pathetic as it is. I am not really good at any one thing. I like guitar, but I'm not good at it. I like art, but I'm not good at it. I like learning, but I feel that I learn a lot, and forget most of it anyway. I like the outdoors, but I'm not athletic or active. I like books, but I don't read enough to be impressive or to seem cultured. All of those things are sort of the pre-existing pathetic-feeling. But THEN, on top of that, I don't have any direction. It is one thing to be talentless and boring. It is another that I basically don't contribute anything to society. Oh? You've learned a new language, have probably tons of self-discovery, and been doing God's work? Well, I don't know what I want to do with my life, and I don't have a job. Basically, nothing has changed in two years. Impressed?
It's not like I just want to impress Brandon. It's that it makes me realize even more (because believe me, I was well aware before) that I am just not that interesting or impressive. I don't think the kind of guy that I would want would be the kind that would want someone who is as useless as me.

A-Bomb

I'm resigning to the future.
It's a beautiful friday afternoon, and I am going to sleep off the overwhelming feeling that I am stuck in miserable, lonely, restless time. When I come back to the living world please don't remind me that it was all for waste.

Wake me up when I've slept off my fears of drugs, or something.


Edit: Apparently you can also wake me up with the offer of soft-serve ice-cream. Angst bomb; neutralized.

I miss I miss I miss.

This Friday my grandparents are flying to Merida, Mexico to serve their (second) mission at the LDS temple. I have to admit I am not over thrilled for them. But that is because I am selfish. Also, it worries me that they will be gone for two more years. A lot can happen in two years. And when you are older, a few years can mean a lot. My grandparents are very young in spirit, though. And I think they will be alright.

Anyway, it got me thinking that I am sort of already missing them. And then I realized I miss a lot of things and people, in different ways. I wanted to reminisce a little.

I miss my overalls that I wore just about every single day in the fourth grade. (or was it fifth?)
I miss my black and white cats, Kitty and Moochy. I miss the healthy Kitty. Even when he was alive, I missed when he was healthy. And of course I always miss Mooch.
I miss my childhood.
I miss my neighbor's sandbox, and the hours upon hours spent in there.
I miss riding on the end of grocery carts.
I miss my grandparents. And sunday morning breakfast at their house.
I miss our old dog, Rascal.
I miss my guinea pig, Gus-gus.
I miss Scotland.
I miss my friend, Whitney. I miss when we were friends.
I miss my cousin, who is just in Provo, but I haven't seen her for like...two weeks.
I miss my sister, who I saw last weekend, but I don't care.
I miss my other cousin, Rachel, in Oregon.
I miss Oregon, as a matter of fact.
I miss being able to ride big-wheel bikes.
I miss all the shows that used to be on Cartoon Network and Nickelodeon and Disney.
I miss Disney World!
I miss my brother.
I miss when my dad was younger and didn't ache and hurt all the time.
I miss my neighbor's swing set.
I miss Plain City as a country-town, not a cul-de-sac town.
I miss beef jerky and rootbeer from Smith n' Edwards.
I miss being in shape. >_>
I miss the summer.
I miss my goat.
I miss riding my bike. Too cold.
I miss my friend, Maren, who I never see anymore.
I miss my horse, Freckles, who wasn't really my horse, but was still my favorite.
I miss stealing sugar cubes from the horse-renters horse trailer.
I miss thinking that we had tons and tons of property.
I miss ice-skating on our pond.
I miss rafting on our pond.
I miss playing under the old trees in plain city's park.
I miss my fourth grade teacher's classroom.
I miss AP english.
I miss my The Mighty Boosh, that never comes on anymore.
I miss when the Harry Potter books were new.
I miss DragonBall Z.
I miss my hammock.
I miss my San Diego Zoo ring, which I lost.
I miss playing the wagon-game with my neighbors.
I miss Santa.
I miss that Harry Potter game that was like Clue, only Harry Potter themed.
I miss watching the Jazz Game AT the Jazz game.
I miss having a hot breakfast every morning.
I miss german pancakes.
I miss Plain City elementary library.
I miss a crapload of things. Have I worn everyone out, yet?
I think I originally was just going to post about grocery carts and the huge tire in my neighbor's back yard that was sort of scary. And then I got a wee bit carried away.

Ugh.

Don't you hate knowing exactly when and where you passed up the path that you should've taken. And now you are too far down the wrong path, and there is absolutely nothing you can do about it?

Yeah, me too.

Pumpernickle Bread

I saw mewithoutYou last night. ridiculously awesome. sad news: my sister couldn't get any non-blurry pictures. granted, the camera is somewhat new, but not one picture wasn't understandable with dark room, and lots of lights. BUT, there are settings for that! I am somewhat bitter. But I usually am when I don't get my way. And I also think my intolerance for other people increases when my self esteem decreases. This is a somewhat epiphany as of this moment. I'm a baby.

aaaanyway, it was ridiculously awesome, regardless.

my sister and her camera makes me angsty and unappreciative.

which are kind of two words that explain me a lot, in a sidenote.

anyway, game night! at my cousins. which meeeaaaans: rock band! oh, amoux, you fox.

Hair

I got a haircut today. I have been wanting to get one for a while. i thought I knew what I wanted, and I thought it would be fairly easy to explain. I also thought I did. But the unsure look on the hairdresser's face should have tipped me off. I now look like the girls from the original parent trap. It is very esteem-sucking, and frustrating. It wouldn't be bad if it were fixable, but the problem is that my bangs are too short, not too long. So now I just need to wait it out and try to resist the urge to just buzz cut it all off this second. Also, any possibly cool styles (faux-hawk) require a lot of hair gel, some skill, and someone who could actually pull it off. And I hate sticky hands, have never been good with hair, and am definitly too lame.

I may or may not post pictures later. But for nooooow...